Category Archives: Trends

Pandemic Doesn’t Mean Panic. It Means Be SSMART

Pandemic Doesn't Mean Panic. It Means Be SSMART!
Pandemic doesn’t mean panic. It means be SSMART.”
Find copies of the poster for printing and sharing here.

This started with a Facebook post made during an online meeting last week. I’ve been really, truly, deeply concerned (read “alarmed”) by much of the panic and fear that is surrounding me on social media. I’m seeing fear-focused messages create situations that cause harm to others, and which can potentially cause harm to yourself. There are a lot of blogposts I want to be writing related to this, but I’m going to start here, with that original Facebook post:

Pandemic Doesn't Mean Panic - Original
Pandemic doesn’t mean panic. It Means Be SSMART!

What is being smart, in this context? I’m giving these mental hooks as places to start:
SSMART = Sanitary, Social Distance, Methodical, Aware, Responsible, Thoughtful.

Let’s start with a plain language version of what those might mean, and then do a deeper dive. The following text is copied from the image at the head of the post, for those working from a screenreader.

SSMART (Plain Language Version)

SANITARY

East or West, SOAP is best! What soap? Any soap you like. If you can’t get soap, then high-alcohol hand sanitizer (>60%) or bleach wipes will do. It’s especially important to wash hands after visiting the bathroom.

SOCIAL DISTANCE

The elbow bump is SO last month! These days social distance means 6-10 feet, or 2-3 yards or meters. If you can reach out and touch fingertips? Yeah, that’s too close. Back up a bit, friend.

METHODICAL

Just like we do our laundry regularly, making hand-washing and social distancing a habit is one of the best ways to keep you and your loved ones safe.

AWARE

If you are feeling good, sure you can go for a walk. Just remember social distance, walk in nature not around people! And look out for those people who aren’t watching where they are (or their dogs).

RESPONSIBLE

Parents take care of children. Grown-up children take care of their parents. Friends take care of friends. We all watch out for each other. This isn’t about me, or you, it’s about all of us. We all know someone who is at risk, probably someone we love. Right now, each time we wash our hands or skip a party, it’s about keeping others safe.

THOUGHTFUL

Helping others stay calm can help us stay calm, too. Checking the source of that news story or web site might make you wonder if it’s actually true. If we talk a lot about how scared we are, we might end up scaring other people around us even more. Who’s listening to what we say? What do we want them to hear? Does what we say help them, too, or make things worse? Stop. Think first. Then share.

The Deep Dive — More Thoughts on These

More Thoughts on SANITARY

All the fuss about hand sanitizer? Yeah. No. Soap works better. Soap is like a grenade for the coronavirus, just destroys it. And people who are cleaning their home personal space to an extraordinary degree? I have nothing against doing this, as long as you recognize that this is largely a way to comfort yourself, and probably not terribly practical for actually managing your risk of catching the virus. That is, of course, unless you have someone in your home who is either at high risk or ill, and you are trying to manage their germs or their exposure to germs. For my home, it is filled with my usual germs, and while, yes, it needs a good cleaning, coronavirus is not why it needs cleaning.

I’ve encountered people who believe witch hazel will be better than alcohol for sanitization, people who believe that antibiotics are better than antivirals, people who don’t understand the difference between different kinds of sanitizers, and similar misunderstandings or misconceptions. If you’re interested, we can take more time to discuss these, but what you really really need to know is that there is one very clear winner for what stops coronaviruses before they get inside you, and that is SOAP.

Regarding coronaviruses on surfaces, there’s also been a lot of confusion and hype. There was an article that the media picked up and misinterpreted a couple weeks ago that talked about how long coronaviruses last on different surfaces. The methodology wasn’t reported well or clearly, so I have some concerns about the quality of that study, but the media latched onto one idea — the 9 days part — and ran with it, implying that if someone coughs outside or in an office the surface is infectious for weeks. NOT TRUE. If you actually read the article, what it really said is:

(a) in a hospital room where a patient with a coronavirus infection of any sort (not just COVID-19) has had a procedure done (such as being intubated) the virus can possibly last a long time on surfaces that aren’t properly cleaned, but we don’t know if it’s infectious or not; and

(b) the only intervention shown to make a real difference in transmission in a pandemic situation is more hand washing stations. In the hospital. Specifically in the Emergency Department.

So, please, unless a sick person was intubated in your dining room or something like that, you don’t need to go do an extreme cleaning your house. Clean, yes, but don’t get anxious over it.

More Thoughts on SOCIAL DISTANCE

What is social distance? First, this basically is being used to mean too far to touch if you both tried really hard, and then add a bit more. Ten feet is ideal, but unrealistic. Six feet is more realistic. It’s not about touching, though, it’s about coughing, and how far the droplets travel in the air. If you have short arms, that doesn’t mean it’s okay for you to get closer to people, because you still cough and breathe just like everyone else.

Secondly, the phrase being used is “social distance” but really they are talking about PHYSICAL distance. It’s fine to talk over Skype with a friend. Socializing is necessary and healthy, just keep our physical bodies away from other people.

This is less critical for SOME people, in some situations. If you are at home, in your own house, with the same people who live there all the time, you don’t need to keep social distance as much, unless someone is sick. If one person gets sick then they need to be quarantined, and then EVERYONE in the house needs to also observe the quarantine, unless they have been keeping social distance. I’m currently quarantined, and for us, this means my son can’t go to work. Bummer, but that’s how it works. Even though his job mostly involves working with soap.

More Thoughts on METHODICAL

This is not easy stuff to do. To actually do it, you have to make it a habit, and build it in. You can help build the habits by adopting behaviors that cut down on opportunities to do your usual thing. Don’t want to touch your face with your hands? Put your hands in your pockets, or do something to keep them busy. Finding yourself tempted to give a friend a hug? Maybe visit virtually instead of in person.

For example, let’s say you have a dog that needs to be walked. You can do this, honestly. Even if you are quarantined, but only have mild symptoms, if you wash your hands and face first, wear a good mask and a pair of gloves, and walk the dog in a nature area away from other people, you can walk the dog and not put others at risk. This is especially true if you go walking very early in the morning or late at night, when other people tend to not be out. But if you live on a crowded busy street, and go walk the dog during rush hour, you have a situation and environment where it becomes very hard to keep away from other people, especially if they don’t understand the limitations we’re talking about. My son was walking our dog, and a woman holding a baby in her arms stopped to try to talk to him. Very sweet, but … no. Let’s just not do that.

So when you are building your habits — the habit of handwashing, the habit of soap, the habit of social distancing — build habits that are smart and include things like time of day, your environment, what your neighbors typically do, and things like this. Build habits that protect everyone, not just you.

More Thoughts on AWARE

This could be a big section, so I’ll try to restrain myself.

Part of this is being aware of people around you, your local environment. As you try to practice social distance, is someone walking up behind you? Who’s ahead of you, and how far away are they? How well behaved is that dog on the leash? That child they hold by the hand, are they trying to get loose and run? Is someone about to cross the street coming towards you?

Part of this is being self-aware, of what’s going on in your body, of the people around you. How are your neighbors doing, who needs someone to check in on them? That little tickle in your throat? Did you cough once or twice? How are you using social media and reading the news, and how is it making you feel? Do you need to take a break for your mental health?

Part of this is being aware of what information is coming out that could change our understanding of the situation. Check the date of this blogpost, and have I updated it (I would say so at the top). If it’s been a few days or longer, the best information might have changed. Right now, with the COVID-19 situation, information is changing so fast no one can entirely keep on top of it, even the experts. Because of this, you may get very different information on the same day from different medical professionals. Don’t just take what you hear for granted, especially if it will make a difference to what you do in your life or how you might put a loved one at risk. Check out more details, ask questions, try to find someone you trust to find out and make sense of it. Most of all, don’t assume anything, don’t take what you hear on face value. Look for authoritative sources who agree on it. Try to find at least three trusted sources saying the same thing, and who get their own information from different places. If the recommendation is all based on pieces that cite the same article, that counts as ONE information source, not three. (I’m thinking of that 9-day figure that freaked people out last week, and was promoted in dozens of news articles.)

More Thoughts on RESPONSIBLE

You heard this from other people. This isn’t about any individual. That’s hard for Americans to hear, land of cowboys and free ranges, frontier heroes. I’m remembering the song from Oklahoma, The Farmer and the Cowman Should Be Friends. In those difficult times, we needed people who were community focused, and those who were out on the edge doing something valuable but alone. We still need both kinds of people, but deciding that it is your personal individual right to go to a party and be wild does not make you a cowman, it just makes you a fool. Don’t be that person. Sure, stand up for your own rights, but think carefully about what those are, and how they impact on the people around you. Right now, if you go to a party, and come back, even if you don’t get sick, you could pass along the virus to someone else, who passes it along to their friend, who passes it along to the dad with cancer, or kid with type-one-diabetes, or their grandma, and that person becomes the one who doesn’t make it. Do you want that on your conscience? Actually, someone who would do that will probably just say, “You can’t prove they got it from me. They could have gotten it anywhere!” Right.

More Thoughts on THOUGHTFUL

Most people want to help, and be helpful. But what people are doing to help, isn’t always actually helping. There’s a lot of sharing of misinformation. I just discovered this great resource which is collecting high quality evidence resources right along many of the myths and legends of the SARS-CoV-2 coronavirus.

FirstDraft: Find information about coronavirus (Covid-19)

As people have been coming to me with questions, I’ve been doing my own research on each one, and it turns out this will actually handle most of the questions I’ve gotten! YAY! So, check here first, before you share that video you found on how hair dryers can cure your COVID-19 illness. No, they can’t, and even worse, they spread the virus all over everything! Do you really want to be sharing something that will make more people sick? I didn’t think so.

What leaps to mind today are the news articles around the new Imperial UK report that is making so many headlines. If you read the report, it’s scary enough without the way the headlines are presenting it. Most of the headlines I’ve seen say something like we’ll have to socially isolate for 18 months or else, and use language like “chilling,” “drastic,” “draconian,” “staggering.” That’s just going to make every one feel so great, isn’t it? More like feeding despair and hopelessness, and those won’t lead anywhere good for anyone.

What’s the alternative? Well, if we see journalists going for clickbait, look for other journalists talking about the same story. Check out this more balanced piece by John Timmer at Ars Technica or the more positively phrased Atlantic piece by actual doctors, “This is How We Can Beat the Coronavirus.” In general, you might want to bookmark and scan another great Ars Technica COVID-19 resource, “Don’t Panic.” These discuss the assumptions underneath the predictions, and what sort of changes could make a difference to these estimates.

You can also find a mix of hyperbolic and well reasoned thought on social media. You want to be careful, and you want to intentionally look for people providing different views. This thread from Jeremy C. Young has a long discussion, which highlights a point I haven’t seen in any of the news stories — that even the worst case scenario is on-again, off-again, not that we stay in seclusion for 18 months straight!

So stop and think about what you are reading, and what you are sharing. Think about who is listening to you, and are you making it worse or better for others?

IMAGE CREDITS

Sanitary: https://www.publicdomainpictures.net/en/view-image.php?image=157635&picture=washing-dishes-vintage-clipart
Social Distance: https://www.pxfuel.com/en/free-photo-jrfol
Methodical: http://www.publicdomainfiles.com/show_file.php?id=13526394611608
Aware: https://publicdomainvectors.org/en/free-clipart/Eye-contact/56082.html
Responsible: https://www.publicdomainpictures.net/en/view-image.php?image=111574&picture=father-and-son-silhouetteThoughtful: https://www.publicdomainpictures.net/en/view-image.php?image=188584&picture=man-reading

Yes, I Heard About Google’s Project Nightingale (An FAQ, of Sorts)

The Nightingale Pledge: I solemnly pledge myself before God and in the presence of this assembly to pass my life in purity and to practise my profession faithfully. I shall abstain from whatever is deleterious and mischievous, and shall not take or knowingly administer any harmful drug. I shall do all in my power to maintain and elevate the standard of my profession and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. I shall be loyal to my work and devoted towards the welfare of those committed to my care.

The Nightingale Pledge for Nurses. CC by Wellcome Collection

My social media streams are blowing up with people asking me (a) do I know about Project Nightingale, and (b) what do I think about Project Nightingale (which seems, in most cases, to be code for “how scared should I be?”). And when the first thing I read about it was the WSJ piece, I also was a bit concerned (although I felt much better once I read better sources of information about this). Enough people are asking enough questions that, despite my rarely blogging any more (because I have articles and print publications gobbling up all my writing time!) I’m going to do a very brief post on this to save my time answering.

What is Project Nightingale?
Why did they keep this such a secret?
But Google BOUGHT Our Data!
Doesn’t HIPAA Mean This is Illegal?
But … What If Google Mixes this Data With Their Other Data?
So, This Isn’t a Bad Idea After All?
What Else?
What do I think?

What is Project Nightingale?

Project Nightingale (assumed to be named after Florence Nightingale) is another Google project. This one is based on a partnership with Ascension Health Care, and focuses on improving the healthcare experience and healthcare outcomes. It is doing this both through providing resources, support, and analysis for current clinical encounters for Ascension clinicians and patients, as well as developing future tools.

Why did they keep this such a secret?

They didn’t, exactly. You might have seen articles in the news with phrases like “patients not yet informed,” “Google began Project Nightingale in secret last year”, “Google’s secret cache,” and “Google Secretly Given Access To Medical Data of Millions of Americans,” but that isn’t strictly what happened.

Google had a phone call with their investors last July 25, 2019 where this was mentioned. There was a LOT of stuff mentioned in that phone call (the transcript is eighteen pages long!), and even in the area of health, they also mentioned BrightInsight, Sanofi, and Cardinal Health. The press releases for the various innovations mentioned in the call have been slowly rolling out, one by one. If you were an investor, you would have heard about it. If you scan their earnings calls, you would have known. If you want to see where the next thing is coming from, their Quarter 1 and Quarter 3 transcripts are also up, and you too can know all the things that are, ahem, secret(?). As in not really secret, just not discussed in the press yet. It’s unfortunate for Google that the Wall Street Journal announced this before their official press release came out, but it isn’t terribly surprising. Oh, and by the way? They have a LOT of healthcare customers they are already supporting in similar ways. Lots and lots and lots (over 50). If you are going to be upset about Ascension, you should probably also be upset about at least some of the others.

But Google BOUGHT Our Data!

Errrr. Well, actually, it looks more as if Google is being paid to help work with the data. Ascension is a customer, is described as a customer as well as a partner, and they have hired Google to do this work. Google describes it as “Our work with Ascension is exactly that—a business arrangement” while Ascension describes it as “working with Google to optimize the health and wellness of individuals and communities, and deliver a comprehensive portfolio of digital capabilities.” Business Wire describes it as “Ascension…is working with Google to…deliver a comprehensive portfolio of digital capabilities that enhance the experience of Ascension consumers, patients and clinical providers across the continuum of care.”

“Q: Is Google charging for these services?
A: Yes. Google is delivering services as part of a commercial contract with Ascension, just like any other work we do with healthcare providers.” Our Partnership with Ascension

Doesn’t HIPAA Mean This is Illegal? What about my PRIVACY?

The “P” in HIPAA doesn’t actually stand for privacy. It stands for portability. As in “Health Insurance Portability and Accountability Act.” The point of the “portability” idea is that it is actually a GOOD idea to be able to move health data from place to place. It is good for patients who change doctors, so they can take their own data wherever they want it to be. It is good for patients in the Emergency Room, so they can be treated without having to wait for someone to find their doctor on vacation, and hopefully this helps to avoid errors that can be prevented with this type of information. It is good for doctors and clinics, so they can get on with the business of actually helping the patients in their clinics in a timely and responsive fashion. It is good for researchers, so they can find new ways of helping people. It is probably good for a lot of other people, also, but you get the general idea.

Now, the privacy bit is a little more nuanced. You see, when they wanted to make it possible for health data to move from place to place, it became necessary to think about what could go wrong if that happened.

“The Health Insurance Portability and Accountability Act of 1996 (HIPAA) required the Secretary of the U.S. Department of Health and Human Services (HHS) to develop regulations protecting the privacy and security of certain health information.1 To fulfill this requirement, HHS published what are commonly known as the HIPAA Privacy Rule and the HIPAA Security Rule.” Summary of the HIPAA Security Rule.

Portability came first. Privacy came second, hand in glove with security. Privacy and security are most definitely important, and there are very strict rules with clear penalties. Privacy applies first and foremost to the healthcare providers, the clinics and hospitals where they provide care, and the other staff and employees with access to the data. There’s another misunderstanding people have, where they believe that NO ONE is allowed to share the health data, but actually, patients can share their own data with whoever they want. That’s a whole different blogpost, though.

The gist of it is that, no, HIPAA doesn’t mean your clinic can’t share your data. It means they have to be very careful about who they share it with, how they share it, and that the people they share it with are legally bound to follow the same rules and are subject to the same penalties. This is true for whoever made the software they use to manage your data just as much as it is for the person who makes appointments in the clinic. In other words, if Ascension shared data with Google, and Google shared the data or used it in ways they shouldn’t, both of them would be in big trouble. Google is well aware of this, and emphasize that they have a Business Associates Agreement that describes the rules they are following.

“All of Google’s work with Ascension adheres to industry-wide regulations (including HIPAA) regarding patient data, and come with strict guidance on data privacy, security and usage. We have a Business Associate Agreement (BAA) with Ascension, which governs access to Protected Health Information (PHI) for the purpose of helping providers support patient care. This is standard practice in healthcare, as patient data is frequently managed in electronic systems that nurses and doctors widely use to deliver patient care.” Our partnership with Ascension

Also, well, you remember all that paperwork you signed when you went to your clinic for the first time? You probably already gave them permission to share your data in exactly this way.

“Arguably requiring permission to be obtained before information could be sent to a subcontractor would interfere with smooth business operations.” Google-Ascension: Why Is HIPAA Probably Not Being Violated?

But … What If Google Mixes this Data With Their Other Data?

“To be clear: under this arrangement, Ascension’s data cannot be used for any other purpose than for providing these services we’re offering under the agreement, and patient data cannot and will not be combined with any Google consumer data.” Our partnership with Ascension

So, This Isn’t a Bad Idea After All?

I do not personally know anything about the insides of this specific project or partnership aside from the links above. I do know that in healthcare information technology, this is the kind of partnership we dream of, where people with a range of skills can use data in responsible ways to help create new solutions to help everyone. Solutions that will never ever exist if innovators and researchers don’t have access to a broad array of data representing the diversity of people we want to help. That may sound a bit pie in the sky, and it is, but “you may say I’m a dreamer, but I’m not the only one.” Basically, who knows what will really happen with this project, but the general idea is absolutely something we need.

Susannah Fox: “We as an industry have a lot of work to do to explain the scope of “health data” and “privacy.””

David Wang: “We (physicians) BEG for this in order to help transition care from hospital to home to ambulatory setting (among multiple specialists). There are SO many reasons this is SO important for high quality and SAFE patient care.”

Mrs. Bertha Mason-Rochester: “And I can’t get a copy of my old mammogram without going in person, filling out paperwork, waiting for a CD-ROM and delivering it to my doctor who then tells me it’s incompatible with their system.”

Kate Corbett: “Feedback on this demonstrates misalignment between public perception, what is necessary to deliver cost effective or #valuebasedcare, #HIPAA, and technological capabilities of @Google and other companies. A #HealthIT partner has to be a steward of patient interests as well.”

Chris Hogg: “I think I’m a contrarian on the @google @Ascensionorg news. Google is a clear Business Associate in this arrangement, and unless they violate HIPAA in the use of Ascension’s data, I think they can add a lot of value to (very siloed) data assets. And benefit patients and docs.”

Juhan Sonin: “Legal = ✔️[check]
Potential for interesting outcomes = ✔️[check]
Ethics scale = 🖕[thumbs up]”

Dan O’Neill: “It’s not obvious that this is new; hospitals have been using identified data to try to algorithmically predict re-admissions & adverse events for at least 10 years.
Also seems discordant to demand interoperability, then criticize data access when it happens at scale.”

What Else?

So what’s the problem, if this is actually legal, and Google does what they promised? The problem lies in the perception that there is a problem. As in trust. Here’s a few pieces about that aspect of the Google-Ascension partnership, what they maybe should have done instead of how this unrolled, and … consequences of a lack of trust.

Will Technology Cure Americans’ Health Care System Ills? Considering Google and Ascension Health’s Data Deal by Jane Sarasohn-Kahn.

A Matter of Trust, Perception, Risk, and Uncertainty – The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions

Also, there’s this thing happening, a federal enquiry looking into the Google-Ascension partnership. I don’t know if that’s happening just because this all exploded in the news, or if there is other information that led to this. But it is definitely a thing.

What do I think?

I think that if Google upholds the principles and guidelines of the original Nightingale Pledge, all will be well.

“I solemnly pledge myself before God and in the presence of this assembly to pass my life in purity and to practise my profession faithfully.
I shall abstain from whatever is deleterious and mischievous, and shall not take or knowingly administer any harmful drug.
I shall do all in my power to maintain and elevate the standard of my profession and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling.
I shall be loyal to my work and devoted towards the welfare of those committed to my care.”

Health & Healthcare at #CES2019

I was working on a blogpost about wearables, smart textiles, and household tech for healthcare when the Consumer Electronics Show (CES) kicked off. Let me just step aside for a moment and collect some of the wonderful new and emerging technologies from there. Here’s a bunch of articles, videos, and tweets highlighting some of what was being shown off at CES 2019.

Gadgets were on or in:

  • abdomen
  • belts
  • ears
  • eyes
  • fingernails
  • head
  • stomach
  • wrists

Health & tech topics included:

  • 3D printing
  • AI
  • asthma
  • augmented reality
  • autonomous mobile clinics
  • babytech
  • body temperature management
  • brain activity tracking
  • caregiving with robots or virtually
  • eldertech
  • fall prevention
  • a fitness tracker that doesn’t require charging
  • food technologies
  • heart health and cardiology
  • imaging and radiology
  • incontinence
  • mobility aids
  • personalized health
  • pet health
  • posture
  • stroke recovery
  • surgery
  • virtual reality
  • weight management
  • wheelchairs that navigate based on facial expression

VIDEOS

CES 2019: Wristband ‘Can Control’ Your Body Temperature https://www.bbc.com/news/av/technology-46840471/ces-2019-wristband-can-control-your-body-temperature

ARTICLES & LINKS

The best CES 2019 health gadgets combat stress, pain, and more https://www.digitaltrends.com/mobile/best-health-gadgets-ces-2019/

Blood pressure watches and DIY sonograms: CES 2019 was all about health: At CES, health, wellness and medical tech are big focuses once again. https://www.cnet.com/news/from-a-blood-pressure-watch-to-diy-sonograms-ces-2019-was-all-about-health-tech/#ftag=CAD590a51e

CES 2019: First Alert Previewing New HomeKit-Enabled Smoke Detector-and-Speaker With Mesh Wi-Fi and AirPlay 2 https://www.macrumors.com/2019/01/07/first-alert-new-safe-sound-homekit-smoke-detector/

HealthTech wearables to major at CES 2019 http://healthtechpulse.com/2019/01/08/HealthTech-wearables-major-CES-2019

The Impossible Burger https://impossiblefoods.com

Matrix PowerWatch 2 uses solar and heat to power GPS, heart rate at CES 2019: The future of wearable fitness tech might be charge-free. https://www.cnet.com/news/solar-and-heat-powered-matrix-powerwatch-2-can-run-a-marathon-with-gps-and-heart-rate/

CES 2019: Omron HeartGuide blood pressure watch is for real: Detecting a sneaky heart condition could get a little easier with this watch: Just lift your arm and push a button. https://www.cnet.com/news/ces-2019-omron-heartguide-blood-pressure-watch-is-for-real/

Smoke Detective http://www.smokedetective.com

What’s new and what’s next in consumer health? https://www.linkedin.com/pulse/whats-new-next-consumer-health-roy-jakobs/

TWEETS

https://platform.twitter.com/widgets.js

It’s about Orlando. But it’s not just about Orlando.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): Wax from burned down candles at the chalked PRIDE flag

This morning I took pictures of UM Diag, where a PRIDE Flag has been chalked in support of the survivors of the Orlando massacre. The candles had burned to the ground, and melted away, leaving wax in the cracks between the bricks.

Chalking Our Pride & Sorrow & Strength & Love (Orlando)Chalking Our Pride & Sorrow & Strength & Love (Orlando): Orlando We Are With You

Last night I was one of a some hundreds of people at the Candlelight Vigil for Peace sponsored by the /aut/ Bar, also in support of Orlando.

Candlelight Vigil for Peace #OrlandoStrong

Yesterday afternoon, I sang with the Out Loud Chorus at Motor City Pride in Detroit.

Motor City Pride & Out Loud ChorusMotor City Pride & Out Loud Chorus

A week before that, I was riding the train home, curled up in a seat by the baggage, away from the other passengers, with tears streaming down my face, grieving for the loss of a dear-to-me friend who was a transgender woman.

DentLib: Exhibit: Boys Will Be Girls, Girls Will Be BoysDentLib: Exhibit: Boys Will Be Girls, Girls Will Be Boys

Two days before that, I’d walked 22,464 steps, because I couldn’t find a cab to get me to the memorial of Robin, one of my BFFs (best friends forever), married-with-children, who had died of cervical cancer.

Robin's MemorialRobin's Memorial

Two weeks before that, the breast cancer community, the healthcare social media community, the WORLD lost Jody Schroger, who I also considered a friend, even though we never met in person, because of the sweetness and richness of our six years of conversations on Twitter. Jody was a breast cancer survivor and advocate, until she wasn’t anymore.

Conversation with Jody - 1Conversation with Jody - 2
Conversation with Jody - 3Conversation with Jody - 4

These things are all connected, and not just through my recent life or experience. They have in common issues of community, loss, love, health, and more. They have in common issues of how to feel safe, how to be safe, how to be heard.

Jody was a hugely influential breast cancer advocate, one of the founders of the famous and successful #BCSM Twitter chat. Jody started out fighting for herself, but that just wasn’t the kind of person she was, so after her diagnosis, she basically spent the rest of her life fighting for everyone else. Yes, especially for breast cancer patients, but it wasn’t long before that became a very gracious and determined effort to encourage equality, access, information, and empowerment for ALL patients.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): I always wish I could to more. Slowly I realize that love is all the more I can give.

Robin had cervical cancer, one of the cancers for which healthcare has done a pretty good job of prevention, or at least really reduced the incidence. Here’s a line from the American Cancer Society about this: “Most invasive cervical cancers are found in women who have not had regular screening.” Now, right up front, I want to say that I don’t really know anything about Robin’s own personal medical history with this, and I wouldn’t share it if I did. What I can share is that sense of hurt and betrayal that comes with the death of a loved one that is perceived as preventable, except for … fill in the blank. While I know that Robin and her family were incredible people, joyful, kind, funny, and generous to a fault, there were times when they had to make tough choices about financial stuff. I’ve had to do the same, but I’ve always had the failsafe of employer health insurance. Not everyone does. I imagine that because there were times when one or another of them worked multiple part-time jobs without insurance, or were self-employed, that perhaps there were a few times when routine screenings for perfectly health people seemed unnecessary. But, as things turn out, the screenings were needed. Is this something that happened because we didn’t yet have Obamacare? Because the insurance people have doesn’t cover what they really need? Is it a question of access or information or health literacy or trust in the healthcare system? I don’t know. But I know that ALL of those issues play a part in the pain and suffering and losses experienced around us every day. And whatever we’re doing to fix them is too little too late for Robin, and I will miss her for the rest of my life.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): "Knowledge was more powerful than fear."

I’ll tell you that while coming home from one memorial is a rough raw time to get the news about another friend’s death. When I got the news, I was no expert, but knew enough about the context of trans* lives to know what you ask when a transgender person dies unexpectedly: suicide or murder? Those are the two questions that leap into your mind, and which you try not to ask. When I hear about a sudden loss of other friends, I’ll ask was it an accident or cancer or some other illness. But not for trans* friends. As friends talked with me about my grief, I was surprised how many had no idea about this.

“From our experience working with transgender people, we had prepared ourselves for high rates of suicide attempts, but we didn’t expect anything like this,” says Mara Keisling, executive director of the National Center for Transgender Equality. “Our study participants reported attempting suicide at a rate more than 25 times the national average.” http://www.commondreams.org/newswire/2010/10/07/study-high-rates-bullying-suicide-attempts-among-transgender-and-gender-non

“A staggering 41% of respondents reported attempting suicide compared to 1.6% of the general population,ii with rates rising for those who lost a job due to bias (55%), were harassed/bullied in school (51%), had low household income, or were the victim of physical assault (61%) or sexual assault (64%).” http://endtransdiscrimination.org/PDFs/NTDS_Exec_Summary.pdf

“The Trans Murder Monitoring (TMM) project systematically monitors, collects and analyses reports of homicides of trans people worldwide. … The name lists present the names and some details about the deaths of the otherwise anonymously reported trans murder victims. These lists are specially compiled for the annual International Transgender Day of Remembrance. The tables present statistics on the world region, country, date of death, location and cause of death, and the age and profession of the victims. The maps illustrate the worldwide scale of the reports of murdered trans persons.” http://tgeu.org/tmm/

If you are one of the good hearted people who is surprised by this, you are probably asking, “Why?” Basically, it comes down to fear as one of the primary motivators of hatred. I could go on a long time, but you are smart folk. Just look in Google for “transphobia” and you will find plenty. For the heartbreak of suicide, I’m a big fan of the Social Media for Suicide Prevention (#SPSM) group who meet on Twitter at 9pm Eastern Time on Sunday evenings. I don’t know of a similar regular chat for transgender life, but there are a lot of Twitter hashtags that might be relevant. Here are just a few: #Transgender / #Trans / #Transpeak / #StopTransMurders / #TwoSpirit. The lesson I take away from these awful statistics, and from the death of my friend, is that love doesn’t always win, at least not at the level of individuals, but that we can keep working toward a world in which love does win. You know, my trans friend who died last week? The events in Orlando would have infuriated her so much. We had a memorial for her tonight, and someone said it was almost like she was one of the victims of Orlando, what with the two coming so close together.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): Love Always, ALL WAYS WINS

At Motor City Pride, I was singing with Out Loud Chorus, which is one of the choirs I sing in. Why do we sing in choirs? For a lot of reasons, but right up there at the top is for friendship, community, creativity, and challenge. (There are a lot of health benefits, too, by the way. 1 | 2 | 3 | 4) Why do LGBT communities have PRIDE events like Motor City Pride? Some of the same reasons (community, friendship, creativity), and some different (it’s a safe space is probably one of the top). “Safe space” is a concept that has been mentioned an awful lot since the Orlando Massacre. Where I’ve seen it, it’s been mentioned as part of a larger explanation of why and how LGBT folk are not and do not feel safe or included as members of our broader culture.

I remember vividly the first time I felt attracted to another woman. It was in high school. She was an upperclassman — lean, olive-skinned, wearing shorts and a man’s sleeveless undershirt. I felt like someone had zapped me with electricity, skin prickling, mouth hot and dry. And I had absolutely no idea what had just happened, because nothing like this had ever happened to me before. I eventually figured it out, years later. In the meantime, yes, I’d been dating guys, been married and divorced, had a kid. By the time I was divorced, a safe space was the number one thing I wanted most in the world. After I had a kid, I wanted the safest place possible for BOTH of us. Attraction to women was something I felt sometimes, but not very often, and frankly, it wasn’t something I sought out or looked for, and never acted on. A big part of “never acted on” was feeling distinctly unsafe. I’d heard the stories, knew about the things that happened to people who were gay. Some of them were pretty horrible stories. Of course, the decision wasn’t as simple (or as reasoned or conscious or aware), as I’m making it sound here.

When I joined Out Loud Chorus (OLC), decades later, I was firmly wearing my rainbow ALLY button. Quite a number of people in the choir are LGBT allies, so I didn’t feel strange about that. I recently sang in my first concert with OLC, selections from which were what we sang for the crowd at Motor City Pride. The title of the concert was “Destination: Me.” It was about transitions in our lives, how we change, how we choose to change (or not). Parts of it were about transitions experienced by the transgendered. As we prepared for the concert, what I kept noticing over and over was how incredible the people are in the choir. The bravery they take into their everyday lives, almost as if they don’t even think about it, it just IS. The determination and laughter. The unquestioning honesty and acceptance of people the way they are. There was a man at the concert in May who stopped the choir in the hall while we were lining up, and said a bunch of hurtful, almost vaguely threatening things to the “queer choir” as we lined up to go perform. I was taken aback. I’m accustomed to being the ally on the side who intervenes when things like this happen. It’s different when you stand there as one of the people with the invisible target on your chest. There is a very distinct “straight” privilege that belongs right there beside white privilege.

I stopped wearing my rainbow ALLY button recently. Today, I started giving away the rainbow ally buttons I have, because, for me, right now, it feels like a lie, and one that, after Orlando, I can’t bear to live with.

Gay Pride Ally Button//embedr.flickr.com/assets/client-code.js

At the Candlelight Vigil for Peace, one of the phrases that was repeated over and over by speaker after speaker was, “knows what it’s like to be afraid to hold hands in public.” You know, there are health benefits to holding hands, too, of course. Rumor has it that this is maximized when holding hands with a romantic partner. Think about that for a moment. Holding hands makes people feel healthier and happier. But if you are gay, you are probably afraid to, or have been. It was strange for me to listen to this over and over. I’ve held hands with people. Usually, just people who are friends. There was one romantic partner with whom I enjoyed holding hands. I’ve held hands strategically when a man was threatening me or endangering me, and it calmed him to hold hands. I’ve held hands with people when my hands were hot and theirs were cold (or the reverse). I’ve held hands with my kids probably more than any other human beings. But I have never held hands with a woman who had romantic potential for me. And even so, I knew what they were talking about, about being afraid to hold hands, about being afraid to even want to hold hands.

My favorite speaker of the night was Amanda Edmonds, the Ypsilanti mayor, who spoke of putting her wife on a plane to Orlando just a few hours after the shootings. Of worrying. Of crying, and not being able to stop. Of not being able to help the way she longed to help. And of finding different ways to help, but starting here, with the people and places where we already are. There were other great speakers, so many of them. It was so special when Jim Toy said we need to remember not only the victims of Orlando, but all the victims, and to stand in solidarity with not only the gay communities, but other marginalized communities who suffer from isolation and exclusion, and when he explicitly stated the need for us to befriend the Muslim community, the crowd practically roared with support and applause.

There was music. This little light of mine, which is probably sung at many candlelight vigils. We shall overcome. The small choir sang a thoughtful piece, with this wonderful phrase: “There is no map for where we go. There is no map for where we go. We’re not lost, we’re here.”

Not lost

Some folk have focused on the why of the Orlando massacre pretty heavily. Was it ISIS? Was it homophobia? Was it self-hatred? Was it planned? Was it mental illness? I’m not sure if it really matters at this point. Or perhaps there is value in both sides, working from a multiplicity of perspectives toward a variety of solutions? Personally, I think there is significant value in taking a nuanced or multifaceted view, in considering aspects of all of the proposed causes. I’m not sure that it really matters to find a single cause to blame for this. The potential causes proposed are all reasonable considerations, they are all ongoing problems. We should be working to correct and improve all of them, as potential causes of future incidents, at the same time that we work to improve safety and provide healing for the families and communities involved in this and other tragedy.

You see, what happened in Orlando is terrible, but it isn’t just about Orlando. There’s a post going viral on Facebook about all the places you can’t go or can’t be unless you are willing to be murdered. It starts with your home and your office. There are similar posts about getting raped. And if there isn’t one, there should be one about who you aren’t allowed to be if you want to be safe in America, with LGBT, Muslim, disabled right at the top of the list, complete with “a different color” and “from a different place,” ending with just plain “different.” You want to be safe? Find a hole and crawl in, and never come out. You want to be safe? Don’t be different, don’t get sick, don’t get injured, don’t be born to the ‘wrong’ parents or have the ‘wrong’ friends or family. Don’t love, because that’s dangerous.

After 9/11, the local Buddhist temple painted an MLK quote on their walls that resonates with me today: “Hate cannot drive out hate: only love can do that.” The messages written around the chalked flag on the UM Diag today focused largely on similar messages, of love, and its power to heal. There was one in particular that seemed to describe an ideal vision for all the underserved, excluded, wounded, isolated, underprivileged people; be they gay or straight or genderfluid; be they patients or survivors or family or providers. The gist of it was that when all our children love themselves, this won’t happen anymore. For our children to love themselves, we first have to love them, and love each other, and set a good example for how to love. You know what? That may be the hardest thing any of us ever do.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): When ALL our sons and daughters like ourselves, this won't happenChalking Our Pride & Sorrow & Strength & Love (Orlando): Muslims Stand With Orlando
Chalking Our Pride & Sorrow & Strength & Love (Orlando): The Only Thing We Have To Fear Is Fear Itself.Chalking Our Pride & Sorrow & Strength & Love (Orlando): Love Over Fear

Yes? Or No? Or HOW? Catching a Predator at Birth (Maybe)

Originally posted at the Krafty Librarian blog.


Catching a Predator at Birth

I almost called this post: “Create attention for your article; write a layman’s summary,” which was the subject line from the e-mail we are discussing locally in trying to decide if it is a predatory publisher or not. (Short version of what we did for those who don’t have time to read the whole story: Identity, Authority, Credibility, Language, Editing, Timing, Licensing, Accessibility, Openness, Sources, Resources. Basically, defining a chain of trust.) I’ve blogged here before about the idea of layman’s summaries, a.k.a. plain language abstracts. They have a great tagline. It’s a great idea. My first reaction was, “How can we help?” Obviously, I think the idea is awesome, and I’ve thought so for a very long time, many years. I am far from the only person to think so. Just take a quick look at these few selected quotes.

DC Girasek: Would society pay more attention to injuries if the injury control community paid more attention to risk communication science?
“We also need to call attention to the injuries that continue to take lives, despite the fact that solid solutions for them have been published in our scientific journals. We need research on translating study findings into public action. Epidemiology and engineering remain central to the field of injury control. We must look to the social and behavioral sciences, however, if we hope to overcome the political and cognitive barriers that impede our advancement.”

Alan Betts: A Proposal for Communicating Science
“Given that the future of the Earth depends on the public have a clearer understanding of Earth science, it seems to me there is something unethical in our insular behavior as scientists.”

Jason Samenow: Should technical science journals have plain language translation?
“Some scientists might resist the onus of having to write a lay-person friendly version of their articles. However, I agree with Betts, it’s well past time they do so”

Chris Buddle: Science outreach: plain-language summaries for all research papers
“1) Scientists do really interesting things.
2) Scientists have a responsibility to disseminate their results.
3) Scientists do not publish in an accessible format.
This is a really, really big problem.”

Chris Buddle: A guide for writing plain language summaries of research papers
“A plain language summary is different because it focuses more broadly, is without jargon, and aims to provide a clear picture about ‘why’ the research was done in additional to ‘how’ the work was done, and the main findings.”

Lauren M. Kuehne and Julian D. Olden: Opinion: Lay summaries needed to enhance science communication. PNAS 112(12):3585. doi: 10.1073/pnas.1500882112
“But rather than an unrewarding burden, scientists (and journal publishers) should consider widespread adoption of lay summaries—accompanying online publications and made publicly available with traditional abstracts—as a way to increase the visibility, impact, and transparency of scientific research. This is a particularly important undertaking given the changing science media landscape.”

This is seen as SUCH an important idea that multiple grants were provided to create a tool to assist scientists in doing this well!

Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR): Plain Language Summary Tool (PLST)

You can find more with this Google Search: (science OR research) (attention OR “plain language” OR “clear language” OR layman OR journalist) (summary OR abstract)

Imagine my excitement when a colleague (many thanks to Kate MacDougall-Saylor) alerted me to a new online publication specifically for this purpose! How PERFECT for Health Literacy Month! A faculty member had asked her if it was a legitimate enterprise. So we looked at the email she’d received, and at the web site.

Dear Dr. XYZ,

We are interested to publish the layman’s summary of your research article: ‘ABC ABC ABC.’ on our website.

The new project ‘Atlas of Science‘ started from 1st October 2015. It is made by scientists for scientists and the aim of the project will be publishing layman’s abstracts of research articles to highlight research to a broader audience.
Scientific articles are often difficult to fathom for journalists, due to the scientific jargon.
Although journalists like to assess the news value quickly, that is by no means simple with most research articles. Writing a short, understandable layman’s summary is a good means to reach this goal.

This makes sense, has a good message, and is accurate about the potential impact so far, but the English doesn’t read as having been written or edited by a native speaker of English, and the formatting is inconsistent. It doesn’t look as if a professional editor did a final review before promoting to the world. Warning Sign #1.

The name of the web site (Atlas of Science) is identical to the highly regarded book from MIT Press and authored by Katy Börner of the Indiana University Cyberinfrastructure for Network Science Center. At first, I thought perhaps they were connected, but quickly realized this was a separate group, simply using the same name. Warning Sign #2.

Most of the rest of the message came directly from the “For Authors” page on the web site (Why, What, Use), except for the instructions.

Submit
∙ Send your summary to info@atlasofscience.org, not later than ##/#/2015.

What do we do with your layman’s summary?
∙ We check the text, and in consultation with you we dot the i’s and cross the t’s.
∙ Your text will be available on the Atlas of Science website, www.atlasofscience.org .
We will actively promote this site to the press.

Please, let us know if you are interested and do not hesitate to contact us if you have any question (simply reply to this email).

This was less worrisome, except … the phrase “not later than” (combined with a date of just over a week to respond) seems to be pressuring the faculty member to respond quickly, without thinking it through carefully, and without time to actually create a well-done plain language summary. Warning Sign #3.

Speaking of a well-done plain language summary, do they explain how to do what they say they want? We checked on the web site. Not really. They tell you what they want, but not how to do it, and they don’t point people to any resources to help them understand what a plain language summary is, what this means, or how to do it. They define no standards, set no guidelines, make only the barest and simplest recommendations (such as word count — 600 words with 2 figures), and do not even mention appropriate reading level. Warning Sign #4.

Does the posted content on the site actually appear to match the stated goals of the site? Not remotely. The pieces posted don’t even match the minimal guidelines they stated in their own criteria. I tested a few of the newest posts. The titles alone (“Regulation of mediator’s expression and chemotaxis in mast cells”, “Minute exocrine glands in the compound eyes of water strider”, “Gene therapy not just counseling for your denim obsession”, tell you these are not plain language, but just to be fair and unbiased, I ran them through a Simple Measure of Gobbledygook (SMOG) Tool, which is only one of several tools and resources available for assessing readability.

Regulation of mediator’s expression and chemotaxis in mast cells
The SMOG index: 20.1
Total words: 766
Total number of polysyllabic words: 180
Total number of sentences: 41

Over 150 words more than the defined limit for the abstract (Warning Sign #5), and written for an audience with a reading level matching those with multiple graduate degrees. The SMOG Index, you see, displays the reading level by number of years of education. 12 is a high school diploma, 16 is a college degree, 18 is a masters, and 20 is well into PhD territory. The average reading level for adults in the United States is roughly 8th grade, meaning that a really well done plain language summary would be written to a SMOG level of 8, at most 12. 20 is a long ways from 12.

Minute exocrine glands in the compound eyes of water strider
The SMOG index: 16.2
Total words: 461
Total number of polysyllabic words: 70
Total number of sentences: 35

Gene therapy not just counseling for your denim obsession
The SMOG index: 18.7
Total words: 573
Total number of polysyllabic words: 79
Total number of sentences: 23

Save your pancreas from diabetes! Your beta cell reserve is critical for prevention and treatment of diabetes.”
The SMOG index: 19.6
Total words: 455
Total number of polysyllabic words: 100
Total number of sentences: 25

It’s easy to see that most of the authors take the word count seriously, and that some of them genuinely tried to reduce the reading level and had an idea of where to start with this. None of them came anywhere close to an 8th grade reading level, and none of them were below college graduate reading level. Warning Sign #6. The writing in the abstracts was highly variable, some included grammatical errors, and there was no sign of editorial oversight. Warning Sign #7.

You get the idea of how the checking is being done. I don’t want to walk you through the excruciating details for every piece, but here are a few more criteria, and then ending with a surprise reveal.

“About Us”: Can’t tell who they are, either individuals or institution. Improper grammar & punctuation. No contact information. Contact form has email address hidden. Warning Signs 8, 9, 10.

Content Sources: Most links are to RSS feeds from major science news services, not unique or locally produced content. For the unique content, authorship is unclear (is author of the plain language abstract the same as the author of the original article?), buried deep in the page, no editor mentioned, and no contact information given for the presumed authors. The links for the original articles go back to PUBMED, not to the original publisher, and nont of them give the DOI number for the articles. Warning Signs 11, 12, 13, 14, 15.

Licensing: For a project of this sort to have the impact it is supposed to on journalists and the public, it would need to have a Creative Commons licensing structure, presumably with attribution. Instead it has “copyright, all rights reserved,” but gives no information on how to get permission to use the content. It appears that the intellectual property rights are held by the website, not by the actual authors. This is (in my opinion) terrible. Warning Signs 16, 17, 18.

Accessibility: Problems using the site on my phone. Tested desktop view, and there are a number of fatal errors, missing ALT tags, empty links, duplicated links, etc. Sloppy, sloppy coding. Nobody’s perfect, but MEDLINEplus has zero fatal errors, just for comparison. If this is from a reputable organization, I’d expect better. Warning Signs 19, 20, 21.

Now, the big surprise! While I was digging around online, I found some of the content, almost verbatim, from an authoritative site! Virtually all of the “For Authors” page is from the Technishe Universiteit, Eindhoven (TU/e). Evidently, they have or had a requirement for graduate students to write a plain language summary of their research prior to graduation. Brilliant concept! The submitted content was reviewed, edited, and selected for possible inclusion in their university research magazine, Cursor. They also had a campus website to host the content. The link for this was broken when I checked today, but the Wayback Machine has several examples over the past several years, including just a few months ago.

The big question now is whether this project is taking the Technische Universiteit model and making it bigger for the world, or was the content stolen from TU/e? There is no way to tell by looking. If this is a genuine project from TU/e, there are some changes they could make to improve the project. If the project is not theirs, I would really love to see the National Library of Medicine recreate a project like this, but done properly. They’ve proven they can. And there is a genuine need.

Comics, Graphic Medicine, and Creating Stigma Awareness: A Panel

Comics, Graphic Medicine, and Creating Stigma Awareness

Last week I mentioned this year’s Investing in Ability events, and that I’m involved with one. Well, this is it! Friday afternoon you can join us to talk about “Comics, Graphic Medicine, and Creating Stigma Awareness.”

The panel includes:

* Susan Brown of the Ypsilanti District Library, who coordinates their Graphic Medicine collection;
* David Carter of the Duderstadt Library, who coordinates the University of Michigan Libraries’ Comics and Graphic Novels collection;
* Anne Drozd of the Ann Arbor District Library on their comics, webcomics, and related collections and activities; AND
* Lloyd Shelton, of the Office of Services for Students with Disabilities.

Each of the librarians will talk about how stigma, stereotypes, and bullying are portrayed in their collections, with Susan focusing on Graphic Medicine, Dave on mainstream comics, and Anne on indie and manga. Lloyd will respond to they stories they highlight from the point of view of a person with disabilities. This promises to be a phenomenal event, and I hope you can join us:

October 16, Friday
Hatcher Library, Gallery (map)
3pm-5pm

The event is in an accessible location, and will be audio-recorded.

Bugs & Genes, Mice & Poop, Worms & Shrooms: 24 Take-Aways from the Microbiome Symposium

Loving the Microbiome Symposium

This time of year seems to be nonstop conferences, symposiums, presentations, meetings, and chats. I’ve been trying to catch up with the Storify collections for all of the ones I’ve been attending or lurking in recently. The Microbiome Symposium was a HUGE one!

In case you didn’t know, I’m fascinated by the microbiome, and have been for years. I’ve been tracking research about it, playing with personal microbiome testing services, finagled my way into being the liaison librarian to the Host-Microbiome Initiative here on campus, and doing my level best to make myself a useful collaborator with them. This all gained me access to the day-long Microbiome Symposium sponsored by Cayman Chemistry, where a few of us live-tweeted. I want to take just a brief moment to talk about some of the highlights. But in case you don’t have time, here is the number one most important critical thing to remember (the rest are in no particular order):

NUMBER ONE: Eat fiber. Lots of fiber. Many kinds.

2. What we don’t know about the microbiome is how all the species interact.

3. Microbes are sort of little factories that make all sorts of chemicals, drugs and poisons (which aren’t regulated by the FDA).

4. Liver and bile are way more important than we expected. To the gut. Yeah, really.

5. Nutrients from food are not one-size-fits-all. What you get out of your food is tailored by your microbiome.

6. The reverse is also true! What you eat tailors your microbiome!

7. What we don’t know about the microbiome is how it interacts with the rest of what our body does, say, for example, exercise.

8. We might be able to predict different diseases by watching changes to our microbiome, like cancer and diabetes.

9. If we can spot predictive changes early enough, we might be able to head them off by changing diet.

10. Most of the bacteria that show colon cancer seem to come via the mouth. So brush your teeth!

11. Don’t eat fiber? Changes your microbiome. Degrades mucosa. Erodes protection from mucus, first line defense. Triggers inflammation. OOPS!

12. It’s complicated.

13. Complexity is important. Eat the rainbow.

14. Fiber is IMPORTANT. Especially eating a diversity of fiber. Try counting how many different plants are in your meals.

15. A diet poor in what make the bacteria happy (fiber, a.k.a. microbiota-accessible carbohydrates, a.k.a. MACs) has immediate impacts on them, long term impacts on us.

16. Diet is a tool to engineer (program) our bodies to meet our goals. What are your goals? Optimize yourself, your health, and your mood, with food!

17. Break the chain, it stays broken. (Once you kill off the diversity of bacteria in your body through poor diet, they don’t tend to come back.)

18. How do you get a diversity of bugs in your gut again? Fecal transplants.

19. Avoid antibiotics whenever possible. but especially early in life.

20. Bugs I want to remember: FLVR = Faecalibacterium prausnitzii, Lachnospira multipara, Veillonella parvula, Rothia mucilaginosa.

21. High fiber diets help protect against allergies, and allergens, and asthma.

22. High fiber diets help protect against different types of gut pain.

23. About probiotics: Dead bacteria don’t work. They have to be live, the kind you keep in the fridge.

24. This isn’t regulated territory yet, the FDA has little sway. Be cautious about product claims.

Now, those were the official take aways, but there were some deeply intrigued nuggets in the hallways conversations and posters as well. There was a lot of unofficial buzz around fungus, and worms (helminth therapy). Things to watch for in the future. Here’s the Storify, if you want to dig into this more deeply.

And in the meantime, I found ANOTHER Storify from a symposium that focused on microbiomics, so here’s that (from Cell Symposia as #CSMicrobiome) as a bonus.

Gartner’s New Emerging Technologies Hype Cycle is Out! (And It’s More Surprising than Usual)

The newest Gartner Emerging Technologies Hype Cycle came out two days ago.

Gartner’s 2015 Hype Cycle for Emerging Technologies Identifies the Computing Innovations That Organizations Should Monitor: 2015 Hype Cycle Special Report Illustrates the Market Excitement, Maturity and Benefit of More Than 2,000 Technologies http://www.gartner.com/newsroom/id/3114217

I’ve been puzzling over it ever since. I’ve been tracking the Hype Cycle as long as I’ve been working in emerging tech. It’s kind of required. This one was immediately and visibly different from others.

Gartner Hype Cycles Over Time

Do you see what I see? The long tail on the right (“Slope of Enlightenment” and “Plateau of Productivity”) for 2015 is FAR more sparse and empty than the others. Concepts like “speech recognition” and “consumer telematics” are gone. Are they considered mature now? I’m not sure. Things that were in the trough last year and should have theoretically been climbing out this year (like “mobile health monitoring” and “near field communication”) are also gone. A lot of very interesting topics are now missing from the report, but are still not quite ready for prime time.

There is a video on the main Hype Cycle page that hints at a bit of the why.

Hype Cycles 2015: “VP Distinguished Analyst Betsy Burton talks about this year’s Hype Cycle Special Report.” http://www.gartner.com/technology/research/hype-cycles/

Betsy Burton explains that Big Data is gone as a hype cycle report because the concept is in so many places they decided to fold it in to each of those other reports. It’s gone as a dot on the main curve also. Is it no longer relevant to the hype cycle? Far from it. But you have to dig deeper to understand.

“But it’s really important that people DON’T consider a position on the Hype Cycle — in other words, moving towards the peak, or even moving towards the trough — as an indication of maturity. It’s really an expression of what we’re hearing as industry noise.” Betsy Burton on the 2015 Gartner Hype Cycles.

They’ve expanded the way the hype cycle reports give information. It isn’t just about the hype anymore, but each report includes information on the specific technologies, their benefits, their maturity, and how well adapted they are to their market. Does it work? Does it work well? Are people using it? Is it ready? These are considered distinct and separate concepts from reporting about the “hype,” the industry conversations and reporting around any specific tech. She mentioned that the technologies are changing VERY rapidly. True, but does that mean that they are leapfrogging from the trough of disillusionment directly into full production for primetime consumption within a year? That seems unlikely.

The three main categories she mentioned as leading clusters are Bio, Smart, and People-Centric.

BIO = biotech; biochips; bioprinting; human augmentation
SMART = smart advisors; smart cities; smart dust (missing from this year’s list); smart government; smart grid; smart machines; smart robots; connected home; wearable devices in smart government
PEOPLE-CENTRIC = people centric experiences; citizen developer; citizen experience; corporate social responsibility; digital workplace; virtual care

Readers of this blog already heard about DARPAbit (“Biology IS Technology”), so bio is no surprise here. Smart tech we’ve been hearing about for several years. The “People-Centric” is what interested me the most. There was another Gartner piece earlier this year that clarifies this: “Smart Agents Will Drive the Switch From Technology-Literate People, to People-Literate Technology.” They also have another separate hype cycle report on consumer engagement with healthcare and wellness (what most of my friends call the “e-patient movement”).

I’m seeing a great many connections in the new ETech Hype Cycle and healthcare, as well as with libraries. Could we make libraries more “literate” about our patrons? Take a look at the curve at the opening of this post. Anything you’d like me to explore more?

White House Champions and the Dream of Personalized, Precision Medicine (#WHChamps)

White House Champions of Change - Precision Medicine #WHChamps

A couple weeks ago, I had just started a blogpost on the White House Precision Medicine Initiative, when I heard that within the HOUR there would be an update from the White House on this very topic, livestreamed! I scrambled, livetweeted, and this is no longer the post I had planned to write, but a rather different one, that has taken a good bit more time than what I had planned. The ‘update’ on the Precision Medicine Initiative turned out to be a White House Champions event. I had not previously heard of the White House Champions, but it turns out this is a wonderful series of events that have been going on through Obama’s Presidency honoring community innovators in a wide range of topics & issues where America has needed innovation:
AIDS/HIV,
campuses,
citizen science,
crowdfunding,
disaster preparedness,
domestic violence,
education (several of these events for different challenges),
food security,
LGBT,
libraries and museums,
NASA,
open government,
open science,
Parkinson’s disease,
public health and prevention,
science equality for women and persons with disabilities,
suicide prevention,
tech innovation and inclusion,
veterans (several of these events for different challenges),
youth homelessness,
youth violence,
and much, much, MUCH more! My mind is just ringing with all that I’ve missed, and all the wonderful creative innovators I don’t yet know about. How did I miss all of this?

At least I didn’t miss the Precision Medicine event! Here are the honorees, and the treasures they have shared with us, in a very small terse form.

Marcia Boyle (MB’s blogpost about the Immune Deficiency Foundation (IDF). Find them on Twitter at @MarciaIDF and @IDFCommunity)

Hugh Campos (HC’s blogpost about data liberation. Find him on Twitter @HugoOC)

Elizabeth Gross Cohn (EGC’s blogpost on the Adelphi University Center for Health Innovation, their Communities of Harlem Health Revival, and their interactive graphic novel. Find her on Twitter at @Chi_Cohn)

Amy Gleason (AG’s blogpost about CareSync. Find her on Twitter at @ThePatientsSide)

Amanda Haddock (AH’s blogpost about Dragon Master Foundation. Find them on Twitter at @AmandaHaddock and @DragonMasterFdn)

Emily Kramer-Golinkoff (EKG’s blogpost about Emily’s Entourage. Find them on Twitter at @emilykg1 and @EmsEntourage4CF)

Howard Look (HL’s blogpost about Tidepool. Find them on Twitter at @HowardLook and @Tidepool_org)

Dorothy Reed (DR’s blogpost about Sisters Network of Central New Jersey (SNCNJ). Find SNCNJ on Twitter at @sistercentral)

Anish Sebastian (AS’s blogpost about Babyscripts. Find him on Twitter at @ASebastian87 and @Babyscripts)

Here is the best Storify I’ve found of the #WHChamps event, by E. Keeley Moore.

It’s amazing that there were over 1000 tweets per minute at the peaK. Here is the Symplur archive of all the event’s tweets:

Symplur: Healthcare Hashtag Project: #WHChamps http://embed.symplur.com/twitter/transcript?hashtag=WHChamps&fdate=07%2F08%2F2015&shour=05&smin=25&tdate=07%2F09%2F2015&thour=00&tmin=00

Did you miss it and want to see it? The entire hour-long event was recorded and is available in the White House Youtube channel.

White House Champions of Change – Precision Medicine https://www.youtube.com/watch?v=yi1Tw1narVo

DARPA: Biology IS Technology, Biology is INFORMATION Technology #DARPAbit

150225-N-CJ559-024

This is possibly the coolest (or scariest) thing I’ve seen since I become an Emerging Technologies Librarian. I wanted to blog about it a WEEK ago (which is when I made the Storify, over the weekend because I was so geeked I couldn’t wait). The reason I didn’t blog it then was because our library is moving into our renovated digs TODAY and packing took precedence. Somehow that delay just makes this even more delicious. You MUST see this!

DARPA (Defense Advanced Research Projects Agency) is the branch of the United States government most directly and publicly associated with emerging technologies. You better bet that I pay attention to what they’re doing. I try to peek at the DARPA budget, go every so often and poke around on their site, and keep my antennae tuned for mentions of DARPA in the news. They are in the news basically all the time, so I can’t pay TOO much attention, and since in recent years they have been largely focused on robotics (a.k.a. the famous DARPA Robotics Challenge) and engineering, and I am focused on healthcare emerging tech, maybe I haven’t visited as often as I might if it was just for fun. That has changed, because DARPA is now officially into the idea of biology as technology. Check out their recent conferences on this topic: Biology is Technology!

“DARPA’s Biological Technologies Office (BTO) is bringing together leading-edge technologists, start-ups, industry, and academic researchers to look at how advances in engineering and information sciences can be used to drive biology for technological advantage.”

Oh, my, yes. Now, THIS is right on target for what I want to know about in my job. And I bet there are all kinds of grants coming around and possible partnerships that our faculty will want to explore. Here are just a few of the bits the news media picked up from these conferences: targeted antibody development and THoR (Technologies for Host Resilience); brain-computer interfaces; cortical modems & optogenetics; engineered biology and GMOs more broadly; exoskeletons; memory technologies; open data and open source; prosthetics; terraforming Mars with GMOs (and there was a LOT on this!).

Craig Venter on headless humans and predicting your exact face from your DNA

There are some topics that interested me that the news hasn’t seemed to talk about yet, at least not prominently. Aging and immortality. Biocomplexity and Crohn’s disease. Cancer. Innovative research methodologies. Microbiomics. Transplantation and organ farming. Future of scholarship. Oh, and there is SO much more. It was livestreamed, but I couldn’t free up the time to watch it, so I am trying to work through the videos now. Here, join me.

DARPAtv: Biology Is Technology (San Francisco, February 2015) https://www.youtube.com/playlist?list=PL6wMum5UsYvZnisi5VjUUjhpXoIMTSCwx

Arati Prabhakar – Director, DARPA
Fireside Chat: Sue Siegel CEO GE Ventures
Geoff Ling – Director, BTO: Fomenting Technological Revolution
Phillip Alvelda – Program Manager: Beyond Prosthetics
Dan Wattendorf – Program Manager: Outpacing Infectious Disease
Jack Newman, Amyris
Alicia Jackson – Deputy Director, BTO: Programming the Living World
Fireside Chat: George Church interviewed by George Dyson
Justin Sanchez – Program Manager: Brain-Machine Symbiosis
Matt Hepburn – Program Manager: It’s the Host not the Pathogen
Stephen Friend – Sage Bionetworks
Barry Pallotta- Program Manager: A Wild Ride
Doug Weber – Program Manager: Enabling the Body to Heal Itself
Justin Gallivan – Program Manager: Embracing Biological Complexity
Keynote Craig Venter – Founder and CEO, HLI, JCVI and SGI
Keynote Saul Griffith – Otherlab
Karl Deisseroth, Stanford University
Will Old, University of Colorado at Boulder
Michel Maharbiz, University of California, Berkeley
Eddie Chang, University of California, San Francisco
Adam Abate, University of California, Berkeley
Scott Ulrey: Doing Business With DARPA

DARPAtv: Biology is Technology (New York City) https://www.youtube.com/playlist?list=PL6wMum5UsYva5aoxvLejhB9eirt0TVD-K

Alicia Jackson – Deputy Director, BTO: Programming the Living World
Welcome to DARPA BiT from Dr. Steve Walker, Deputy Director of DARPA
Dr. Geoff Ling: Fomenting Technological Revolution, DARPA BiT
Martine Rothblatt: Keynote at DARPA BiT
Dr. Phillip Alvelda: The Future of Neural Interface, DARPA BiT
Dr. Alicia Jackson: Programming the Living World, DARPA BiT
Jack Newman: Keynote at DARPA BiT
Zach Serber: Keynote at DARPA BiT
Dr. Elizabeth Strychalski: Biocomplexity, DARPA BiT
COL Matt Hepburn: It’s the Host Not the Pathogen, DARPA BiT
Dr. Doug Weber: Neurobiology as Technology, DARPA BiT
Kevin Tracey: Keynote at DARPA BiT
Dr. Justin Sanchez: Brain-Machine Symbiosis, DARPA BiT
MAJ Chris Orlowski: Optimizing Human Performance, DARPA BiT
COL Dan Wattendorf: Rapid Health Protection for the Population, DARPA BiT
Dr. Harvey Lodish: Keynote at DARPA BiT
Dr. Justin Gallivan: Building with Biology, DARPA BiT
Dr. Barry Pallotta: A Wild Ride, DARPA BiT
Dr. Geoff Ling: Day 1 Closing Remarks, DARPA BiT
Dr. Geoff Ling: DARPA BiT Day Two Introduction
Dr. Stephen Friend: Sage Bionetworks – DARPA BiT Keynote Speaker
Dr. Paul Cohen: DARPA Program Manager, DARPA BiT Keynote Speaker
Dr. Joel Dudley: Mount Sinai School of Medicine – DARPA BiT Keynote Speaker
Dr. Peter Sorger: Harvard Medical School – DARPA BiT Keynote Speaker
John Sculley: Former CEO of Apple and Pepsi-Cola – DARPA BiT Keynote Speaker
Scott Ulrey: DARPA Contract Management Office – DARPA BiT
Dr. Geoff Ling: Day 2 Conclusion – DARPA BiT

So much good stuff! I just had to make a Storify to integrate the videos with the pics and tweets.

And I made a big playlist with all of the videos so far, from all the sessions (partly because I started making this playlist before I found theirs, and because I want all of it in one place, easy for me to find).

Patricia Anderson: Playlist: DARPAbit: https://www.youtube.com/playlist?list=PLEEZFNZ4nUEDTdj_dxxYLz9z7kSZH-oP1


REFERENCES (Chronological order)

2015/02

Robbin A. Miranda, William D. Casebeer, Amy M. Hein, Jack W. Judy, Eric P. Krotkov, Tracy L. Laabs, Justin E. Manzo, Kent G. Pankratz, Gill A. Pratt, Justin C. Sanchez, Douglas J. Weber, Tracey L. Wheeler, Geoffrey S.F. Lin. DARPA-funded Efforts in the Development of Novel Brain–Computer Interface Technologies. H+ Magazine February 9, 2015. http://hplusmagazine.com/2015/02/09/darpa-funded-efforts-development-novel-brain-computer-interface-technologies/

Peter Rothman. Video Friday: DARPA Prosthetics Research. H+ Magazine February 13, 2015. http://hplusmagazine.com/2015/02/13/video-friday-darpa-prosthetics-research/

Peter Rothman. Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+. H+ Magazine February 15, 2015. http://hplusmagazine.com/2015/02/15/biology-technology-darpa-back-game-big-vision-h/

Max Plenke. These Are the 7 Ways the Government Wants to Change the Human Body for the Future. Tech.Mic June 26, 2015. http://mic.com/articles/121341/darpa-biotech-7-ways-the-government-wants-to-change-the-human-body-for-the-future

2015/04

Peter Rothman. Restoring Active Memory Replay — DARPA Seeks Super Learning and Enhanced Memory Technologies. H+ Magazine April 28, 2015. http://hplusmagazine.com/2015/04/28/restoring-active-memory-replay-darpa-seeks-super-learning-and-enhanced-memory-technologies/

Maxx Chatsko. Can DARPA Change Your Mind on Engineered Biology? The Motley Fool interviews DARPA’s Dr. Alicia Jackson from the Biological Technologies Office. The Motley Fool April 30, 2015. http://www.fool.com/investing/general/2015/04/30/can-darpa-change-your-mind-on-engineered-biology.aspx

2015/06

Sara Reardon. The Pentagon’s gamble on brain implants, bionic limbs and combat exoskeletons. Nature News June 10, 2015. http://www.nature.com/news/the-pentagon-s-gamble-on-brain-implants-bionic-limbs-and-combat-exoskeletons-1.17726

Lily Hay Newman. Researchers Sharing Data Was Supposed to Change Science Forever. Did It? Slate: Future Tense June 24, 2015. http://www.slate.com/blogs/future_tense/2015/06/24/darpa_s_biology_is_technology_conference_discusses_problems_with_open_source.html

Brian Wang. DARPA wants to engineer from millions of organisms and not just yeast and ecoli. Next Big Future June 25, 2015. http://nextbigfuture.com/2015/06/darpa-wants-to-engineer-from-millions.html

Carl Engelking. DARPA Is Supposedly Engineering Organisms to Make Mars Livable. Discover Magazine June 26, 2015. http://blogs.discovermagazine.com/d-brief/2015/06/26/darpa-is-engineering-organisms-to-make-mars-livable/

Carl Tanaka. DARPA Genetically Engineering Organisms for Terraforming Mars into Livable Planet. ReliaWire June 27, 2015. http://reliawire.com/2015/06/darpa-genetically-engineering-organisms-for-terraforming-mars-into-livable-planet/

DARPA to terraform Mars with human-engineered organisms. Business Standard June 28, 2015. http://www.business-standard.com/article/pti-stories/darpa-to-terraform-mars-with-human-engineered-organisms-115062800459_1.html